This is aimed at others who have recovered from pneumonia and come out the other side!! Any helpful advice gratefully received!
Since I was discharged from hospital 8 days ago, I have felt tired, panicky and a bit lost. A District Nurse came yesterday to do a blood test but couldn’t seem to answer any of my questions. I was just told to “listen to my body”! I also can’t get a follow up appointment with my GP for a fortnight! Apart from being told to avoid chest infections etc. I haven’t a clue what I should be doing! I am panicky about going out in case the cold air harms my lungs, will it? I am also very, very tired. I feel like I will never drive, go out or be normal again. I have IPF and obviously don’t want to make things worse but with winter coming on, I am very nervous. This illness has really shaken me up as I feel that I brought it on myself with ignoring signs and symptoms and just hoping that I could ride it through. Sorry if I sound a bit whingey but I am feeling very down at the moment.
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Aingeful
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Aingeful - pneumonia is a serious illness in some people, particularly if there is existing respiratory disease. My OH had bilateral pneumonia a few months ago and was in hospital for some time. It was made worse by him not being diagnosed earlier, despite seeing a number of health professionals.
From my limited experience I would say that your reaction is probably normal and that it will pass with time. You’ve had a bad scare and are feeling vulnerable right now. The lethargy is also normal post pneumonia and can last for several months. Try relaxation exercises - they might help. There is some information about this on the No Panic website.
If you can talk to someone about how you feel, it might help you to come to terms with things. If not, take one day at a time and tell yourself that you will feel better but not just yet. You need more time.
BTW you didn’t bring this upon yourself, any more than my OH did. You developed pneumonia because you have existing lung disease and are therefore vulnerable. As a carer, I have taken what I can from the experience and learned from it. Now I don’t hold back - if I have concern about him I telephone the relevant personnel for advice.
Thanks Bella,you're right I have had a scare!! I should have gone to my gp when my chest infection wasnt getting better,I wasnt eating drinking and was feverish every day. I ignored this!! I have got a Tai chi book out and will have a try at that I think. Perhaps I'm expecting too much! X
I am not sure that my experience 4 weeks ago will really help. Mine was in the lower, right lobe along with septicemia. 60 hrs in hospital. We are different though, I have Emphysema not IPF.
I have had a really rapid recovery. Been on away on holiday for a week at the Norfolk Broads followed by a week at home, worked for 4 days last week and resting again this week. Still a slight feeling of fatigue when not busy. My breathing not quite back to where it was before but other than that feel pretty good. Anxiety has not been an issue with me either, just the opposite, maybe I'm just over confident or even stubbornly by refusing to give in.
Sorry that I have not been much help to you. It is a serious illness, of that I have no doubt at all and know that it can often be fatal. So I think you may be right to be cautious if you are still feeling a little rough.
I remember your post 2 greys,I think I replied to it!! I was shaken up and anxious and still am at how near I was to "curtains"!! I think I was hours from it all being over! Well done on your recovery,so glad you had your holiday. X
Aingefull,i would do what your not very helpful district nurse suggested and 'listen to your body' which basically translates into going very easy on yourself for the next couple of weeks,avoid going out until you feel much stronger and try to be alert to the usual signs of a reinfection as you would with any exacerbation but also try to distract yourself with other non taxing things which should help with anxiety and of course if you feel you are weakening or getting poorly again call 111 and if necessary get yourself fast tracked back to the hospital that dealt with you but hopefully that won't be needed if you take things easy,
I am sure you will gently recover in your own time.
Sorry to read that it is taking a while to recover from pneumonia Aingeful but you have been very poorly. Perhaps you should have kept Unicorn a bit longer while you recovered from the after effects. I couldn't help smiling at the listen to your body advice. I can't imagine how listening to the wheezing, gurgling and rumbling would have helped me; some of the noises are quite rude! I'm sorry I can't help you with advice, I just wanted to wish you well and hope you soon feel more like your old self. 🙂x
Hi, 2 years ago I had double pneumonia I thought it was just a bad chest infection, I also have Asthma.
It took a few mouths to recover to the stage close to before but I ended having to change my inhaler, they told me after being in hospital for 9 days I could of died, it does scare you, I find myself not staying out in the cold to long, thing is if we don't expose ourselves to the elements some times we would not cope if we had to , I follow how my body feels, and yes we are at more risk of getting it again and again.
Take care of you, it is you that will know if it is right.
Difficult to avoid people.I have a big family and belong to art reading and music groups which keep me going.My pet hate and they make me want to kill, are people who just cough and sneeze all over the place. What's wrong with tissues!! X
Hi, I very nearly lost my wife to pneumonia a couple of years ago. She also has copd, First ,do not be anywhere near anyone with a cold. The feelings you have are normal. Your doctor should be prescribing you antibiotics etc. The nurse gives good advice, but ,you must be prepared to act on it.You may not have copd but their advice is very good, especially at this time of year for all things related.
I had pneumonia and a collapsed lung last year and I went back to work too quickly so don’t do that!! It prolonged the coughing and exhaustion. It took me ( but that’s just me) at least 9 months or more to feel normal again in terms of energy etc.
Try not to be anxious about it. It is a shock to the system but the great news is that your body coped with it and now has some antibodies to fight it off.
I found it hard to climb stairs without the heavy breathing for at least 4 months, they changed my inhaler in hospital to, I am scared still to get very cold and wet, and have not been out much the last few months I am a wildlife photographer, advice I will give is you can't avoid people completely, keep out of the frosty weather unless your wrapped up tight with a scarf over your mouth, you know you listen to you, we all push it and end up regretting it later.
Pneumonia is dreadful and it will take you at least 6 weeks to get over it, longer to feel normal. Just rest, your body needs that, then each day if you feel up to it, do a few more things around the house then eventually little walks outside in the fresh air. You will feel better, it just takes time.
I do think your doctor should be seeing you regularly to monitor your progress.
If you are worried get an emergency appointment at your doctors.
Thanks Shirley,getting an appointment isn't all that easy unfortunately. My Consultant appointments have been cancelled twice as well. A lot of recovery will be up to me I think!X
I have IPF and this time last year I was going through a very bad chest infection
I had about eight different types of Antibiotics without getting it cured
By the middle of December I had caught pneumonia and ended up in hospital over Christmas and new year ( six weeks in total)
I had a pharyngeal pouch that I knew about and this caused me to aspirate food into my lungs. That was what was causing the problem
I had an Ng tube put in and was nil by mouth for over a month to give the IV antibiotics a chance to work and it did.
Upon discharge from hospital I was like you, absolutely knackered all the time so I let my body tell me what and when to do things I rested a lot and it worked.
Hang in there and things will improve I know it can be scary but you will come through, just give it time.
Thanks Brian, gosh,you have been through it haven't you? Do you know if the pneumonia affected your IPF. that is one of my main fears that I have "rattled its cage" !! I had been stable this last couple of years! X
I probably get more chest infections than before but that’s IPF
Hope you’re feeling better
Regards
Brian
Hi Aingeful, I'm sorry to hear you are feeling so awful. I completely understand as I have been there too. When you say you dare not go out and are panicky. You are actually listening to your body! It doesn't feel "safe" for you at the moment to go outside. Take the pressure off yourself by believing how you feel is right! Take it slowly and build up your confidence inside, doing what you can when you can... And no more! You will start to feel stronger and these feelings will pass. It took me 6 months to recover from and get over feeling like I was too near the light for comfort! And tbh it worries me every time I get a cold now that I will revisit that dark pneumonia place. But I do go out now and I do enjoy life, but I have a respect and newfound fear for my fragile place on this planet. I hope this helps you to know that it will get better, and to be gentle with yourself and build up your strength slowly.
I wish you well, and advise you to believe in how you think and feel. You do know your body best. And until you have survived "the scare of your life" I don't believe anyone can tell you how to think or feel about it. Certainly someone who hasn't been there. It is a very traumatic experience and flippancy from well educated health care professionals, who "see it every day" is exactly that, and to be taken as the well meaning, if a little light on actual experience that it is. I went 2 steps forward and 2 or more back on a daily basis until eventually I grew a little stronger and I began to move forward. Happy if I was strong enough to make a cup of coffee and drink it. Even happier if I was able to take my dirty cup back to the kitchen. And as for going outside, I enjoyed leaning out of a window for some fresh air for a few minutes a day, to hear the birds and the rain and the wind in the trees long before I was able to walk up the garden and sit on a bench to catch my breath before I walked back, and long before I could go out in the car. Small achievable goals when you can manage it. Slowly slowly will get you there.
Don’t push yourself to do anything that you don’t want to. I’ve had pneumonia a couple of times and it took months to get back to what my doctor called my baseline. Tai chi sounds an excellent idea - as little or as much as you want to do. I think we all forget how much a course of antibiotics can take out of us let alone the disease and infection on top. Let your body rest and drink plenty of fluids. If you feel like a little walk take one but don’t go too far. Good luck I’m sure you will start to feel better gradually.
My dad had it 4 times on top of coped, his body had had enough by then he died at 76 in 2017 after many years of suffering, we all cope with things differently, but the more you have weakens you, keep as healthy as you can, yes walking is great way I do it, hugs.
It took me months to recover properly from pneumonia. I thought I would never get better! We went onto Wiltshire Farm Foods which were easy to throw in the oven and weren't too big, so easily digested (my husband used to top his up with cheese and biscuits). I couldn't even stand and peel a couple of potatoes. Making a cup of coffee was an effort. I couldn't get out so either I did an online shop or my husband did the shopping. Gradually, I started to walk up the garden - just a few feet at first, then a little further each day. Getting out in the fresh air was lovely. Eventually, I'd got enough strength to go for short walks and finally I got back to cooking dinners and shopping, and hanging out the washing. I've never quite got my interest back in some of the things I used to enjoy eg painting, sewing, knitting, but I think that's down to laziness now! However, I walk a lot more these days without getting too breathless, take the bus places, go out socialising and generally have a nice life. Something I found out was that the world doesn't come to an end if you can't manage a shower or do the work around the house. There's always tomorrow! Be kind to yourself and you will recover, but not necessarily as quickly as our friend 2greys. xx Moy
I smiled at your reference to 2 Greys I think I joined in the chorus of people telling him to look after himself!!
re Wiltshire Farm Foods. I have done a bit of Mystery Shopping work and they were one of my jobs! I had to order a weeks main meals and a weeks puddings. I had to test and report the transaction from start to finish.Starting with the phone call and eventual delivery. They got a glowing report. I was surprised at the wide choice of foods and the way they cater for all types of diet. They were extremley yummy as well!
I always keep some of the meals in the freezer, just in case. They are great. It must have been fun doing mystery shopping. I applied to a few places when I first retired but nothing came of it. I'd forgotten all about it until you mentioned it.
Re 2greys, I was worried about him, but it all worked out ok for him, didn't it? I wish I was as resilient. xx Moy
Mystery Shopping is fun!! I am on the books of Storecheckers and Mystery Shoppers. You need to make sure you have applied to a genuine firm. It is not well paid at all,I just found that it kept my mind active. I liked acting out the various scenarios as well. You need to be very observant and miss nothing! I loved being able to reward good employees with a good report. The bad ones, I used to be thinking " Big mistake" !!😀xx
Hi Aingeful - I took at least 6 months to recover fully from pneumonia It's a very debilitating condition. I took my meds and stayed in the house until I felt strong enough to venture down the road Your breathing will probably help you to decide. I had lots of visitors- those who were ill came when they felt better. Take care and rest. Small steps forward. x Anita
I’m sorry to hear you have been so poorly. I had pneumonia last year and believe me it takes a long time to get over. That’s without having IPF. My advice to you is do what your body lets you do. Perhaps do a little walk around the house at first and when you feel like it do a bit more. If you fancy a walk round the garden then do it. Make sure you eat well and drink well. Nobody can tell you when you are ready to do more-only you will know that. You do what your body is telling you. There will always be someone telling you to do more but just tell them you will when you feel able.
hat "someone" is a friend of mine who believes that everything can be cured by Paracetamol and Pilates exercises. I am 9 days out of hospital ad would you believe that she rang me to ask if I was going out tonight!!??X
I know from a couple of weeks after I came out of hospital. One of my boys said I should get up and go out for a walk or something. After having it said a couple of times I remarked that when I felt like it I would be doing it. Thankfully now I can go out for my walks. I hope you are feeling better soon.
Do not panic captain Mainwaring! I had pneumonia and a serious lung infection 8 weeks ago. Still zonked and so tired but gradually improving- it can take months to recover so don’t worry- just do what you can, lots of TLC and hot drinks, keep away from crowds if you can and put your feet up! You will feel better- just give it time 💕
Aingeful - it is most important that you don’t acquire another infection. You are vulnerable at the moment and relapses can occur. Please don’t push yourself and stay home for a while longer.
On the subject of you berating yourself for not getting help sooner, it might have been due to delirium which causes disordered thinking. In some patients confusion due to delirium is the only symptom of pneumonia and it is one reason why clinicians miss it, putting the confusion down to dementia whether the patient is diagnosed with it or not. This is what happened with my OH who subsequently spent about six weeks in hospital due to bilateral pneumonia.
Hi Hun, I'm trying to catch up between nodding off as I am still Poorly.. Ok, I had it too, went in with my first exacerbation Blue lights n all, about 3 years ago, Whilst being treated I was told I had a piggy back rider, the unwanted Pneumonia which I picked up in Hospital, I stayed in hospital for 3 weeks. Once home it took another 4/6 weeks to go, Sorry Hun, we are all different, and the clingy B....r wouldn't leave me. Eventually I got back to being me and Vowed I would always wear a mask, especially in GP's & Hospital, Which I do, even last week with my Consultant. That time 3 years ago, was when I started on Azithromycin, taken it ever since. This "Thing" I have now is a Long low exacerbation with no infection. So I'm now on Oramorph, it is suppose to stop the Breathlessness? Waiting.... I am so Annoyed this has happened and has stopped me from Going out, No Exercise Classes for a Month already. The only thing I can suggest for you & myself is to Stay Positive and make Plans for next week. I may go back on Prednisolone Which I hate doing, but they do give some relief for the Lungs to Breathe. I Hope You can Overcome this a lot quicker, But you must Look after Yourself Hun. Lots of Love & Gentle Hugs. XXXX C.
Thanks Hacienda, you're not having a particularly fun time yourself? I have come to the conclusion that I have been expecting too much of myself! We both need to just "be" for a while! I wish our weather was more like the Spanish winters I had. My daughter drove me to my favourite greengrocers just for a little outing. It nearly froze my face off!! However,I have got some yummy fruit and veg to help get me well. Hope you soon feel better.xx
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I think I joined in the chorus of people telling him to look after himself!! 
Morrison recovering from night out.
Pneumonia 
Pneumonia 
Pneumonia 
Lost a dear friend yesterday from complications of pneumonia 
